Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Astrocytoma Grade III-Survivor

12345679»

Comments

  • NicoleSC
    NicoleSC Member Posts: 1
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    ellen, Thanks for sharing your positive story

    Thank you 

    all the best to you. 

  • Anthony0724
    Anthony0724 Member Posts: 1
    edited June 2016 #243
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    Hi. My name is Anthony an my

    Hi. My name is Anthony an my girlfriend was  diagnosed with  anaplastic astrosytoma stage 3 six months ago. My question for u is how do I help her get tru

  • dieseljr
    dieseljr Member Posts: 2

    I'm asking if any has had a reoccurance of tumor. I was treated  with 6 month of temador/radiation   Was just told that after 6+ years of tumor has returned. Has anyone else had reoccurrance what drug did as treatment for it on reoccurrance.  They want to change chemo drug temador to avastin.

    Any experiences with Avastin?

  • Hello

    Hi Jose,

    how are you ? My name is Natalia, my son Brian was just diagnosed with grade anasplastic astrocytoma .

    he is waiting for radiation and immonotherapby.  do you mind to share your treatment history ?

    thank you so much

    natalia for brian

  • garryze
    garryze Member Posts: 1
    edited January 2017 #246
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    Astrocytoma grade 3

    Hi there

    i am been diagnosed a glioma on frontal left lobe after i had a seizure on 7th november 2016. they have removed it with surgery on 30th november. After that they call me and told that i had a astricytoma grade 3. now preparing for chemo and radiation and have fear in mind as well as i have my wife and two kids in australia with me and my father and sister are living overseas. Could you please help me by telling anything about this process?

    Thanks

  • lthenderson
    lthenderson Member Posts: 19
    edited February 2017 #247
    garryze said:

    Astrocytoma grade 3

    Hi there

    i am been diagnosed a glioma on frontal left lobe after i had a seizure on 7th november 2016. they have removed it with surgery on 30th november. After that they call me and told that i had a astricytoma grade 3. now preparing for chemo and radiation and have fear in mind as well as i have my wife and two kids in australia with me and my father and sister are living overseas. Could you please help me by telling anything about this process?

    Thanks

    Hello Garryze,

    Hello Garryze,

    My mom was diagose with anaplastic astrocytoma on June 30, 2016. Like you, she had the surgery to remove as much as they could get. In October she went through 6 weeks of radiation. The radiation itself did not due much to her physically except for hair loss and sensitive skin on her scalp. However, she was in great shape which helped. Others also going through the same radiation had more issues with being tired all the time the more out of shape they were at the beginning. Once the radiation is over, the sensitive skin grew less sensitive with time especially as her hair is starting to grow back. They waited a month after radiation before they began treament with chemo (Temedor). She has been on that for a little over two months now with 5 days on and 28 days off schedule. As they continue to up her dose, it has started to affect her energy levels more along with some nautiousness but neither has been too bad yet. She just had her first followup MRI post radiation treatment and the cancer is still at bay for now and the hole where it was continues to shrink. I hope this gives you an idea of what to expect.

  • prajwal
    prajwal Member Posts: 2
    edited July 2017 #248
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    dealing with AA grade 3

    hi how is your health now ? are you following up with MRI . please reply on [email protected]

  • stin1106
    stin1106 Member Posts: 1
    BenLenBo said:

    Temodar
    My son is taking Temodar, the 5 days on 28 off. So far he has had no side effects from the drug. He was diagnoised September 25, 2011 with a Grade III Oli. 99% percent of the
    tumor was removed from his left frontal lobe. He has suffered no effects, is good as new. He was given 6 weeks of radiation and Temodar at the same time. Took motion sickness pill 20 minutes before the Temodar, and ate a health diet, 3 meals and snacks. The temodar is designed to kill the bad cells in the brain, but will also kill other good cells. Bad cells will die, where the good with recover. Benjamin's enhanced MRI after 6 weeks of treatment showed no cancer. He had 1p/19q deletion. Hope this helps!

    Checking in

    How is your son doing?

  • Anniepanda
    Anniepanda Member Posts: 1
    ajd1234 said:

    please help
    Hi, my niece has AA, the doctors are not giving us a lot of time.
    She was diagnosed 4 months ago , had radiation done, chemo. Please help if anyone has a child with non-operatable AA grade 3.
    May G-d help all who are suffering with any illness. thank you, angela

    ‹ Childhood Medullablastoma Is No Treatment an option? ›

    Inoperable tumor

    how is your Niece?

     

    [email protected]

  • shmane
    shmane Member Posts: 1
    Grade 3 Anaplastic Astrocytoma

    I have been diagnosed with a grade 3 anaplastic astrocytoma. I have had surgery to debulk and I'm looking for input around Follow up treatment (Radiation and Chemo). I don't want to have chemo and I'm looking for anyone out there who has had the surgery and the radiation. Anyone???

     

  • jaearly
    jaearly Member Posts: 2
    RCOLUCCI said:

    IT'S ENCOURAGING TO HEAR
    IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

    newly DX AA grade 3

    My 26 yo son recently DX w AA grade 3, total resection left frontal lobe in Dec 2017. Still some word finding recognition issues, especially bad after drinking (he keeps reminding me he is 26 and wants to be normal) Just started radiation, finished 10th dose of 30 treatments of radiation then to start chemo (temodar) for 6 cycles. So far no side effects from radiation. Just wondering how you are doing years later.

  • peterz54
    peterz54 Member Posts: 341
    shmane said:

    Grade 3 Anaplastic Astrocytoma

    I have been diagnosed with a grade 3 anaplastic astrocytoma. I have had surgery to debulk and I'm looking for input around Follow up treatment (Radiation and Chemo). I don't want to have chemo and I'm looking for anyone out there who has had the surgery and the radiation. Anyone???

     

    Please post as new thread

    Hello,   I noticed that you posted in an old thread started in 2008 by Quilmes who hassn't posted since that year.   Suggest you go back and start your own new thread so it will be easily seen as it now buried at the end of 6 pages.  

     

    Peter

  • kdconnor
    kdconnor Member Posts: 1
    jaearly said:

    newly DX AA grade 3

    My 26 yo son recently DX w AA grade 3, total resection left frontal lobe in Dec 2017. Still some word finding recognition issues, especially bad after drinking (he keeps reminding me he is 26 and wants to be normal) Just started radiation, finished 10th dose of 30 treatments of radiation then to start chemo (temodar) for 6 cycles. So far no side effects from radiation. Just wondering how you are doing years later.

    Anaplastic astrocytoma

    My son was also 26 when he was diagnosed (on my birthday) July 31, 2017.  I was just about to start chemo for breast cancer July 4, when we got the call that he had a seizure and they found a mass.  It was initially thought to be a grade 2 tumor, but by the time of surgery on July 27th the MRI showed that it had changed and they saw the enhanced area in the middle.  The biopsy confirmed the grade 3.

    He missed 3 months of work and stayed with us while we drove him to treatments daily.  I was able to suffer through my first chemo in a portable bed in the ICU after his surgery.  We took care of each other for the remaining 2 months.  He had 6 weeks of chemo and radiation, a month rest and 6 cycles of a much stronger chemo.

    He has since returned to work and his apartment 3 hours away.  He needs his job to keep his healthcare.  He is now seeing doctors at John Hopkins near him.  He will finish his last chemo next month.  His has an MRI every 2 months and they have been clear.  He has to work during chemo because he is out of sick leave.  He takes medicine for nausea.  His platelets have been dropping too low and he has to postpone each treatment a few days to recover.

  • jaearly
    jaearly Member Posts: 2
    kdconnor said:

    Anaplastic astrocytoma

    My son was also 26 when he was diagnosed (on my birthday) July 31, 2017.  I was just about to start chemo for breast cancer July 4, when we got the call that he had a seizure and they found a mass.  It was initially thought to be a grade 2 tumor, but by the time of surgery on July 27th the MRI showed that it had changed and they saw the enhanced area in the middle.  The biopsy confirmed the grade 3.

    He missed 3 months of work and stayed with us while we drove him to treatments daily.  I was able to suffer through my first chemo in a portable bed in the ICU after his surgery.  We took care of each other for the remaining 2 months.  He had 6 weeks of chemo and radiation, a month rest and 6 cycles of a much stronger chemo.

    He has since returned to work and his apartment 3 hours away.  He needs his job to keep his healthcare.  He is now seeing doctors at John Hopkins near him.  He will finish his last chemo next month.  His has an MRI every 2 months and they have been clear.  He has to work during chemo because he is out of sick leave.  He takes medicine for nausea.  His platelets have been dropping too low and he has to postpone each treatment a few days to recover.

    My son has been working and

    My son has been working and living at home too. Starts Chemo in 2 wks. His sales territory is in another state and will need to move back there after his 6 mo driving restriction is over due to seizure. Did your son have a 6 mo driving restriction? Did you need a doctors release to return to driving? How are you boh feeling now?

  • smdennison
    smdennison Member Posts: 3
    edited June 2018 #256
    AA3 recurrence

    My daughter was initially diagnosed jan 2014 when she had just turned 25, with a Right frontal lobe tumor.    She had surgery the next day to remove most of it and then we sought out a 2nd opinion at Mayo Clinic.  She opted to do radiation there and then PCV chemo.  Due to radiation nectrosis, she had a second craniotomy early Oct 2014 and continued chemo until 12/10/14 when she was told she was stable and no longer needed to take chemo.  The tumor at the time was called an Oligoastrocytoma grade III, but later the WHO changed it to Anaplastic Astrocytoma III.  It is IDH positive.She continued with follow up MRI's regularly until Novembe 2017 (almost 3 years) until that one showed some changes.  We went back to Mayo and 2 days later, she had her 3rd craniotomy.  At her surgical follow up, it was determined that she should start temozolamide 5/28 cycles.  After 6 cycles, there was increased enhancement of one are of the rear of the resection cavity.  one more cycle was recommended with follow up this past Wednesday, June 20th.  There appears now to be increased blood flow which is indicative to possible tumor progression.  Chemo is being changed to Lomustine, every 6 weeks.  She has not had any neuro deficits and remains to be helthy otherwise.  She does suffer from nerve pain along the incision site of her craniotomies.  We are looking at considering a second opinion at M-D Anderson.  Anyone have any thoughts? 

  • smdennison
    smdennison Member Posts: 3
    edited June 2018 #257
    peterz54 said:

    Please post as new thread

    Hello,   I noticed that you posted in an old thread started in 2008 by Quilmes who hassn't posted since that year.   Suggest you go back and start your own new thread so it will be easily seen as it now buried at the end of 6 pages.  

     

    Peter

    Thank you!

    Thank you!